When Janie Bowthorpe was diagnosed with hypothyroidism at age 30 she thought it would be the end of the fatigue, dry skin and hair and other troubling symptoms that had been plaguing her for three years before her diagnosis. She was put on medication meant to replace the thyroid hormone that her body was no longer making, and her doctors considered her cured.
Instead, she continued to have debilitating fatigue, as well as dry skin and hair and low-grade depression, and none of the many of doctors she saw or the battery of tests they gave her offered an explanation. This went on for twenty years.
"By the time I was 50 I was about to apply for disability from Social Security because I could barely leave the house," she says. "I'm a fighter but after twenty years of this I was ready to give in." Despite that fact that she took thyroid medication every day nobody had suggested that her symptoms were related to her thyroid. "But I thought, 'I'm on a thyroid medication, what else is left?' so I got on the internet and read everything I could about thyroid conditions," she says.
She learned that before the 1960s patients with hypothyroid were given a different kind of thyroid drug, called desiccated thyroid hormone. Taken from pig glands, she says, desiccated thyroid contains all 5 of the thyroid hormones that our bodies make when they're healthy—t1, t2, t3, t4 and calcitonin. The drugs she'd been taking (first Synthroid and then Levoxyl) contained only t4. "Starting in the 60s these t4 drugs were marketed as this great new innovation," she says. "The body converts t4 to t3, so the thinking was that taking t4 was all we'd need." As a result, drugs containing only t4 are the go-to prescription for hypothyroid. (One reason, say some doctors, is that desiccated thyroid can have more variablity than synthetic thyroid drugs—you can read more about the thyroid drug controversy here.)
But Janie learned from other thyroid patients that taking only t4 hadn't worked for them, and that getting the right dose of desiccated thyroid had. Although it took some work, she eventually found a doctor who would listen to her, switch her prescription to desiccated thyroid, and help her identify the correct dose. The results felt nothing short of miraculous: "Voila, I felt less fatigued within one week," she says. "Within a few months I noticed a profound difference, and now I have the stamina of a teenager. I went from applying for Disability at 50 to feeling like a teenager at 60."
Through her research and connecting with other thyroid patients, Janie also learned that the tests usually used to diagnose thyroid disorders don't always adequately assess them, or aren't properly interpreted. "So often, people know that something is wrong with them, but doctors will do these inadequate tests and then say 'It's not your thyroid,'" she says. "And there's a big body of patients out there paying the price, and getting spurious diagnoses like Chronic Fatigue or Fibromyalgia."
So to help inform others she started a Yahoo group called Natural Thyroid Hormone then, in 2005, the website StoptheThyroidMadness, which eventually led to a book of the same name. "At first I got a lot of criticism," she says. "Doctors were angry—they'd say 'Who are you to be giving this advice?' but now they're starting to listen."
Her website is a must-read for anybody diagnosed with thyroid disease, as well as for people who suspect they have thyroid problems. According to Janie, most doctors only test for one hormone (Thyroid Stimulating Hormone, or TSH) when investigating thyroid symptoms, even though there are indications that that test is insufficient, and may result in you being declared "normal" even though you are hypothyroid. She recommends additional tests (measures of "free t3" and "free t4"), and understanding that you can be hypothyroid even if you fall in what doctors consider a normal range. She designed the site as something you can use to inform yourself before going to the doctor and demanding different tests, or to try different thyroid medications.
If you're wondering what the symptoms of hypothyroidism are, here Janie's exhaustive list as it appears on the StoptheThyroidMadness website (though keep in mind just about everybody has at least a few of these symptoms, so having some of them doesn't mean you're necessarily hypothyroid):
- Less stamina than others
- Less energy than others
- Long recovery period after any activity
- Inability to hold children for very long
- Arms feeling like dead weights after activity
- Chronic low-grade depression
- Suicidal thoughts
- Often feeling cold
- Cold hands and feet
- High or rising cholesterol
- Heart disease
- Plaque buildup
- Bizarre and debilitating reaction to exercise
- Hard stools
- No eyebrows or thinning outer eyebrows
- Dry hair
- Hair loss
- White hairs growing in
- No hair growth, breaks faster than it grows
- Dry cracking skin
- Nodding off easily
- Requires naps in the afternoon
- Sleep apnea (which can also be associated with low cortisol)
- Air hunger (feeling like you can't get enough air)
- Inability to concentrate or read for long periods of time
- Foggy thinking
- Inability to lose weight
- Always gaining weight
- Inability to function in a relationship with anyone
- No sex drive
- Failure to ovulate and/or constant bleeding
- Moody periods
- Inability to get pregnant; miscarriages
- Excruciating pain during period
- Aching bones/muscles
- Bumps on legs
- Acne on face and in hair
- Breakout on chest and arms
- Exhaustion in every dimension-physical, mental, spiritual, emotional
- Inability to work full-time
- Inability to stand on feet for long periods
- Complete lack of motivation
- Slowing to a snail's pace when walking up slight grade
- Extremely crabby, irritable, intolerant of others
- Handwriting nearly illegible
- Internal itching of ears
- Broken/peeling fingernails
- Dry skin or snake skin
- Major anxiety/worry
- Ringing in ears
- Lactose Intolerance
- Inability to eat in the mornings
- Joint pain
- Carpal tunnel symptoms
- No appetite
- Fluid retention to the point of Congestive Heart Failure
- Swollen legs that prevented walking
- Blood pressure problems
- Varicose Veins
- Dizziness from fluid on the inner ear
- Low body temperature
- Raised temperature
- Tightness in throat; sore throat
- Swollen lymph glands
- Allergies (which can also be a result of low cortisol-common with hypothyroid patients)
- Headaches and migraines
- Sore feet (plantar fasciitis); painful soles of feet
- Now how do I put this one politely....a cold bum, butt, derriere, fanny, gluteus maximus, haunches, hindquarters, posterior, rear, and/or cheeks. Yup, really exists.
- Irritable bowel syndrome
- Painful bladder
- Extreme hunger, especially at nighttime
- Dysphagia, which is nerve damage and causes the inability to swallow fluid, food or your own saliva and leads to "aspiration pneumonia".
Bowthorpe says that you shouldn't be shy about telling your doctors if you want additional tests or to try different medications. "You have to go in there informed," she says. "Say 'I've been learning from other patients, and from this book, and here are the labs I want, here is the medication I want ot be on, here's how I want to try raising it, and I want to know if you can support me in this.' You have to go in there informed or, in most cases, you will stay sick."
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